When I am not a Scientist, I am a runner, a baker, a reader, a writer, a mother, a Christian, a liberal, a wife, a church goer, and a work in progress

Monthly Archives: November 2014

Let’s take a minute to reflect on how well our day started (park trip)

A letter to my pediatrician after his explosive diagnosis:

Part 2: Getting the diagnosis

Dear Dr “I”;

Edit: If this tl;dr then know this: you effed up Dr. I, and I am not happy.

Dr I, Hopefully you read part 1, and so now you know that you walked into the room to face a very tired, over stimulated, cranky toddler (who was doing quite well for this) and his increasingly stressed, nervous mother. Strangely when you came in, you also looked quite distracted and worried, and not your usual ‘I have all the time in the world, your child is everything to me’ chilled self, although I appreciate that latter is a façade put on for the benefit of your patients.

With a distracted look, you turned your screen to me and started the usual litany of statistics: “Growth charts… Sam started here, and as you can see, he is still way off the chart. We’re looking at 6ft 4” still”.

I hate this part.

This is the part of the well-child check where you announce my child will be 6 ft 4 (AT LEAST!) when he grows up and wait for some reaction from me. Firstly: I don’t believe you, but time will tell. Secondly: what reaction do you want? Height is achieved, plainly through no skill of mine, my husband’s or my child’s. It’s not difficult as a middle class Ameri-Brit family to provide adequate nutrition to allow my kiddo to fulfil his genetic potential and so I really don’t feel I can take credit for this. Nor am I actually particularly over-joyed: I try not to focus on global beauty standards with my child because I would rather the world, as a whole, did not set general standards of beauty and hold people up to them: I’d much rather we more openly acknowledged that beauty is in the eye of the beholder and celebrated tall, short, fat, thin, middle, blonde, brunette, curly, straight… whatever. Sometimes, in response to my slightly panicked look you say “He’ll be a basketball player!” and while I appreciate that Sam is too young to be affected by these things now, I also am not into pushing him in any one life direction. So, while it is not particularly harmful, it doesn’t come easily to me to say ‘Yes! Because of his genetically determined height at 24 months old, I have decided exactly what will make him happy in his 20s”. Anyway… I am an over thinker and these are the things I think in the deafly awkward silence following exclamations about my son’s projected height.

He’s a cutie

One day I’ll get it right. One day I’ll say something brilliant like “6ft 4? Fabulous, his life span will be shorter than if he were not tall”. Or maybe “That tall? Excellent, if medicine advances very quickly, and he is able to gestate his own children, he’ll be more likely to have twins“. And we’ll move on from this awkward conversation.

Sam’s height 0-24 months

But today, you barely paused at his 99th percentile + height. Or his weight (29.5 lbs), or how excellent his weight-for-height percentile is (70th). You looked haunted. You said “and that’s done”. And I said “No vaccines?” and you said “not this visit”, and when I saw ‘flu vaccine on your screen, you gave a long pause and said “maybe the ‘flu… if you want it…”.

And this is where we started to mentally part ways.

“Ummm… do I want it?” I aksed. Despite being militantly pro-vaccination, I was now alarmed by your hesitancy. “What do you recommend?”. You looked uncomfortable…

“It’s up to you”. Up to me? Aren’t doctors supposed to be full of the joys of vaccination? My damn OB would barely let me get out the door without a ‘flu fax (OB! What is obstetrical about that?!?). One of my performance criteria at work is having the ‘flu vaccination BEFORE Nov 1st (I work in a clinical environment – doctors everywhere). And here you were, hesitating…

Your hesitation threw me and I said “Ummm… I guess we won’t get it?”

“Good” you said and brusquely moved on.

I WOULD LIKE TO POINT OUT THAT YOU, MR ANTI-FLU VACCINATIONS, WHO TREATS HUNDREDS OF CHILDREN A WEEK, ARE CURENTLY OFF WORK WITH THE ‘FLU. Think about that.

He’s pretty interactive

Back to my topic. You turned to Sam. “Can I have a hug?”. Sam paused. He looked at you. He thought about it. “Hug Dr I…” I gamely said (although I also don’t especially support making children be affectionate to people they don’t want to [bodily autonomy and all that] or to strangers [far scarier reasons]). Sam, dutifully, blessedly, went in for a hug and as he did he saw a jar of sticks about your head. He looked at me and pointed, but you deposited him on the ground and shook your head.

He can love cuddles

You asked Sam how he was. You asked him what he had been up to. Actually, so that I could take a ‘phone call about how my MRI showed that my brain is inflamed (don’t even go there Dr. I) and my sinuses all screwed up, he had been watching an episode of Thomas Train. So, he told you about it “Thomas got stuck on the bridge!” he said (although it sounds more like ‘Tos stuck on the widge” – that’s what you might remember). You didn’t reply. I imagine this was perplexing to Sam, who repeated it. You didn’t reply. He said it again, and then Sam supplied the answer you are supposed to give “Oh dear!” he said ‘What happened?”. Your response?

“Sam, can I look in your eyes?”.

How is this even appropriate?? Acknowledge the damn Thomas story. Lawd knows I do it at least 100 times a day.

You seemed to want to put him on the bed, and I gestured that that was fine, but something was up, I don’t know what, and you took hm off the bed and plunked him on my lap. You shone your little light thing at him and looked in one ear, then said ‘Sam, look at me’ and when he didn’t, moved the light to his other ear.

And then you were done. And you were packing up and mumbling something about his language not being very good for his age. And secretly? I was almost a little pleased because I have been saying for over a year that Sam is not very good at langauage – he learns it, eventually, but way slower than other kids. He got his first word quite early, but then he never had the ‘explosion’ other kids go through. He knows his alphabet, the knows his numbers, he can communicate what he wants, but his language is not great. I have been pointing this out, for over 12 months, and everyone has been shushing me. And honestly, in that moment, all I could think was ‘HA! Now I can tell Wes that I was right and we need to work a little more at Sam’s speech’.

Daddy cuddles

You left the room.

I started the laborious task of packing up 26 alphabet cards that Sam really wanted to call out both the letter and a word starting with that letter for each one. Sigh. Half way through this, you came back in the room.

“I don’t think I was clear with you”

“Ummm… OK?”

“Your child’s language is not as it should be”

“Yes, I know, I have been saying this for a while… I am wondering what we can do to help it come along” I said.

“No, you are not listening to me… your son has a problem…”

and while I remember nearly all of the visit up to this point with crystal clarity, everything became a blur from here. Here are the snatches of conversation I do remember. You saying “His speech is repetitive, and it is out of place” and ‘We call it echolalia”.

You said “I can’t get him to look me in the eye” and I remember saying that I was pretty sure he looked me in the eye and you – you who sees my son for 5 minutes every 6 months – had the audacity to shake your head.

And then you broke my heart a little bit when you said:

“The things you think are cute – are a problem”.

Not “a problem” – he is actually cute

I remember you repeatedly saying to me, in this stupid grave voice “I need to be clear here”. I remember you getting frustrated that I wasn’t doing – I don’t know what – throwing my hands up in the air and weeping? Because honestly I was thinking “OK, so Sam has some language delay, Sam has some social problems, that’s fine, we’re all different – I love my son! If he needs help, we’ll get it, and if this is just him, this is him, and we’ll love him! We are so blessed to have him”. This is what I was thinking as you started saying, in a voice I would personally reserve for a potentially fatal illness:

“I want to refer him to the autism clinic” and I was trying to get some calm here, and some perspective. And I told you that I was fully aware that Sam had some language delays and that this converstaion was not a huge shock to me, because I am a trained Developmental Psychologist, and I knew langauage delay was a sign of ASD and so I had looked out for this for months, and I really didn’t see it (ME! HIS MOTHER – yes, mothers can be wrong, but please give my feelings / intutition / experience some credibility, or some acknowledgment). And you said “No, he is on the spectrum. He is clearly high-functioning, but on the spectrum”. And I immediately thought ‘well… we are all on the spectrum – that’s why it is a damn spectrum, but OK, I don’t really believe you, but if this the case then fine, we love our kiddo and I see no reason to think that he won’t always be as great as he is now…”

He’s an insanely happy kid – that’s all that really matters to us

And when I conveyed this to you, it clearly bothered you (or maybe you were grumpy because you had the ‘start of the flu) because you started to talk about ‘regressions’ and ‘not using language at all’ and his words ‘disappearing’ and then I got scared. I love my son as he is now – I am not prepared for him to change. I do remember clearly trying to back you up. I remember saying “hang on, he has a father who is a self-confessed loner and a mother with intense, almost pathological social anxiety – I am a behavior geneticist, he has not had a great start!”. And that is when you took all my suggestions, all my reasons, all my attempts to calm everything the F down and you looked me straight in the eye and you said:

“Let me be clear. Your son is atypical”.

And I was shocked. And upset. And confused. And disbelieving. And you said “I am not using the big A word yet, but he IS on the spectrum, and he will regress”.

Funnily enough, at this point Sam decided to run up and hug your leg and you looked at me and said “He is a really sweet boy though” and I was thinking ‘Though? THOUGH? He is a really sweet boy, end of’. I said “OK, so what can we do?” and we mentally really parted ways when you said:

“Look for the regression and call me”.

And then you left. I went to the car. And I texted my friend Sheryl to see if I could go and see her, and I cried. And cried. And cried.

Let’s be clear – my son is pretty behind in his language development. We are getting him a formal assessment – and would be delighted to particiate in any prescribed intervention. Or just delighted to let Sam be Sam and focus more on his other strengths. BUT, given that he is 24 months old, that he has a more limited environment than most other toddlers, that you remarked on his broad vocabulary, and that he is very slowly starting to put words together [‘car is white’ or ‘ladybug on nose’], I suspect it is too early to know if this is truly a developmental delay, or if he is just the tail end of normal. However, even if my son was showing early signs of ASD (he was not) or not, this is what I really want to tell you.

Here are the ways you momumentally messed up (and let’s not even go into being hesitant to give my son a vaccine that could save his life):

(1) You never, once, asked if I was the primary caregiver, or how much time I spent with my child;

(2) You mistook a screener for a diagnostic tool;

(3) You didn’t administer the screener properly, in that you never checked I understood the questions (I didn’t);

(4) You made the classic error of forming an opinion before seeing the child, and going for confirmation, rather than taking an open view, and being as objective as possible; You would do well to read and understand Rosenhan’s classic 1973 article “On Being Sane in Insane Places” (or tl;dr? Here is the wiki link which explains the problem of assessing someone you have already labelled);

(5) You made no attempt to get to know the child and get him comfortable in his environment before performing an assessment of his normal behavior;

(6) You didn’t listen to his mother / father – the main informants with diagnoses at this age;

(7) You mistook ‘at increased risk’ for ‘definitely on the spectrum’;

(8) You were utterly reactive [‘just wait for the regression and call me’] and not proactive [hey – how about some language intervention? Social stimulation? Let’s see what we can do)]

(9) Most egregious of all (I think, it’s a toss-up with 8) you treated ASD like it was the worst thing in the world – I couldn’t understand why I was so upset in the car, I kept saying ‘pull youself together Lekki, it’s not like he has pediatric cancer ffs’ but it was your tone, your gravity, your attitude that it was all downhill from here. Your lack of reassurance, your “he is a sweet boy though”. I am not naive – as a class teacher in a special needs school I have worked with the full spectrum of ASD. Children with ASD are still children, they still have a lot of offer, they can still be a joy. When you said “what you think is cute, is a problem” is NOT the case. What I think is cute in Sam, is cute. He is a darn cute kid. It may also signal a developmental difference – but he is still cute.

Why am I making such a big deal of this? Soon, I will get around to writing part 3: the aftermath. But it has been a really a hard week. It is really hard to have someone tell you there is something wrong with your child. It is really hard to have someone imply blame, and to tell you that there is nothing that can be done. It is harder still to be told that things will change – that you will lose the child you love so much to a ‘regression’. My friend Craig put it best: “There are some things you can’t unhear”. Whatever I think of your (mis)diagnosis you have cast a shadow over the next year. We are constantly questioning ourselves, questioning Sam, wondering what will happen. I am questioning my whole parenting philosophy (probably best summed up as ‘unparenting with lots of cuddles’). Wes is questioning his ability to look after his son. We are both genuinely quite shocked that anyone thinks of Sam as anything less than wonderful. Different – sure. But different isn’t bad. I feel so protective over my son.

This could all have been so different. You could have said “Hey, there are some things I would like to keep an eye on. Let’s get someone out to check Sam is hitting all the targets we expect. He could be a little more sociable, and better at language at this stage, and I just want to make sure we are giving him the chance to fulfil his potential”. Or whatever. We can discuss what should have been done in part 3, when kind people actually did things properly.

Edit: If this tl;dr then know this: Doctor’s surgeries are shitty places to get a decent assessment of a child.

Earlier this week, my son and I came for his 24 month check-up. You might have remembered us from previous visits, because we have always come as a 3-some: myself, my son and my husband. You have commented that it is “nice that Dad comes” – assuming, I guess, that he is the main bread winner. Actually, he is a Stay-At-Home Dad and I am a Work-out-of-Home Mum and this is technically his “job”. He arrives early, having packed a diaper bag full of those things needed to manage a 2 year old out the house with minimal disruption to people around him, and bouncing a toddler who has been well-dressed to my specifications. I am the one who arrives just in the nick of time, dashing into the surgery in a flurry, leaving a trail of apologies in my wake while I fend off emails on my cell ‘phone. I am also usually shedding small toys from my handbag that I packed this morning because I want it to look like I am deeply involved in my son and fear everyone’s judgement not only as a working Mum, but one who frequently works 6 days a week and in the evenings. I guess you don’t usually see all this because, actually, I have never known you to be on time.

However, this week our only child-safe vehicle was kaput and with a toddler in Houston that is a problem. So my husband offered to go and replace it, while I took Sam to his check-up. This time *I* was the one who arrived early, looking calm, dressed not in a forbidding suit but casual Mom-dress that I actually selected to look a bit fashionable, but also a bit cosy. How I would like to look if I was a Lady who lunches. Successful, but approachable. In tow, I had my son looking smart in a new outfit. I had carefully packed a ‘Thomas Train’ wheelie suitcase full of educational but engaging, wooden (not plastic!) toys. I selected those that would keep my son entertained, but also show off his intelligence, such as his ability to label every letter, tell you it’s sound, and give you something that starts with that letter. ‘A? Ah-ah-ah-ah… Apple!’.

So this (predictably) happened about 10 minutes before we arrived at the office

Despite all this careful preparation, the visit did not get off to the greatest of starts because it was slap bang in the middle of nap time. Yes, I scheduled it for then, but there seems to be a microcosmically small window of time when we can get a morning appointment with you. I am still not even sure if it is possible. Call 2 months before the appointment due date? Too early – call back later. Call 6 weeks before? “TOO EARLY” says the irritated receptionist. Call 5 weeks ahead? The same receptionist gasps “Oh its so late! Why didn’t you call earlier? I guess we can squeeze you in in the afternoon”. I have never successfully figured this system out, so I just bring my son at times inconvenient to us, and especially to him.

12 month old picture of Sam in the Texas Children’s Pediatrics witing room.

You were running late (surprise!), so I wrangled my active, grumpy toddler around the waiting room which does have toys and fish and books and other children, so it’s generally not too bad. He saw a little girl, probably about 4-5 months of age. “Baby!” he yelled delightedly, and ran offer to offer her some of his cheese. Embarrassed (but secretly a little proud too) I apologized to the baby’s mum. She laughed and didn’t mind. It was going OK. I can do this. I can handle the Mum stuff. I can not only handle it, but handle it well.

The nurse came out – “Dr I is running late, we’ll take his blood first”. Take his blood? No one told me this. But, OK, whatever, I do whatever medical professionals recommend, so we sat in the lab waiting room and I filled in forms while my son spilled his milk on the floor and stomped in it saying “Splash!” and my carefully cultivated exterior began to unravel a little. This year’s form asked tonnes of questions – 4 pages of them. ‘Does your child point when s/he needs something’. Yes. ‘Does your child smile back at you?’. All the time. ‘Does your child bring you things to show you. Not for help, just to share?’. Ummm… not sure. I don’t see him in the day much… He brings me presents… this morning at the park he brought me an ants nest [I chided myself for throwing it down in disgust] but no… never just to show me, only to give to me. Circle ‘no’.

An ants’ nest gift. I would have preferred a flower.

‘When there is an unfamiliar sound or person in the room, does your child look to you?”. I can’t really remember an unfamiliar thing happening… I can recall when strangers come over for a visit and my son (who is somewhat shy) gets uncomfortable he runs over to me, and asks to be picked up or holds my leg. I think. It doesn’t happen often. I search the recesses of my mind and curse myself for not being able to recall such a situation. OK, no, I guess he doesn’t ‘look to me’, rather he runs over to me. OK, I’ll circle ‘no’.

Of course, this is a truncated version of what it is like for me to fill in this damn questionnaire, because I am filling this in while watching an over-tired toddler careen around the room. So my thoughts actually go something more like

“When there is an unfamiliar – Yes you can have some cheese – sound or – Please stop giving the baby cheese – person in the – No you can’t have a cookie – room, – Please stop yelling – does your –Sam! Stop yelling, you can’t have a cookie, but you can have a banana – child look to you?”. I can’t really – No banana? How about milk? – remember – Here is your milk – an – Oh no, the milk is spilled, shall we clean it up?– unfamiliar thing – Very good!! Put the paper in the trash please – happening… – No! The trash! Don’t give it to that little boy! – I – No! Stop making him eat it! Oh God, some mother is going to be hella pissed at me now – can recall – Shoot, where did I put *my* bag?Where is my wallet? – when –There it is! But wait, where is my… Sam! Put all your letter cards back” – strangers come ‘Oh God, where is Sam?!? I’ve lost my child. Oh, he’s counting the fish. Very good. Yes, there are three fish – over” and well… you get the picture. These are my thoughts as I search the depths of my mind for memories of obscure situations and try to quell the growing tide of Mummy guilt that I don’t know my child as well as I should, haven’t been observant, have missed these key times in his life… all the while trying to fill this damn questionnaire in. I wish my husband were here, we’d tag team it – one would fill in the questionnaire, double checking with the other, and the other would amuse Sam with increasingly silly games. We’re a good team. We’re not bad solo, but it is somewhat uncharted territory. But I pride myself for being honest in this questionnaire. Wary of Mums who think their child can do no wrong, I err on the side of caution.

Oh how he loves his letters. Also: why did I bring letters to play with which have many (well… 26) parts to get scattered around the waiting room.

My “successful but approachable” exterior was becoming slightly more disheveled.

Ahhh.. we’re being called for the blood draw. “Sam, shall we go see the nurse?”

Sam: “Nope”.

*Curses myself for making it a question”. “Well we are going anyway”.

Sam toddles in, and is strapped in a chair on my lap. He doesn’t want to be strapped in a chair. He wails. The nurse pricks his finger and he is a little annoyed, but hellaciously pissed when she keeps squeezing blood drops out. Repeatedly. Despite him repeatedly saying ‘No, no, no!”. This is not helping his mood. When the blood taking is done, I walk off with my over tired, angry toddler and find ‘Room E’. Looking at the letters distracts Sam from his anger – he dutifully called out each letter on each door and when he sees ‘E’ says ‘Yaaaaay!”. Wait, what? He has to go *in* Room E? But he wanted to continue telling Mummy what all the letters were. He loves letters! He hates sitting in small bare rooms! Oh man, is he angry.

This sums up Sam’s thoughts at having his blood drawn.

But, he’s pretty reasonable, for being one of the the irascible, irrational, unpredictable things known as a toddler. Distracting him with his toys works somewhat. Then I find a book – a new book! A book from the doctor he hasn’t seen. Sam sits down and gets busy “reading” the book – turning the pages and pointing out everything that he can. The nurse comes in. Sam doesn’t look up – it’s a new book!! “Sam, can I measure your head?”

With nary a pause he says:”Nope”.

She looks unsure. I don’t know if I should intervene? I decide not to – I am not the medical professional here after all. She continues:

“Sam, I am measuring my head – look! Can I measure yours?”

Without really looking up: “Nope.”

The nurse looks like no 2-year old has ever refused the amazingly wonderful treat that is having your head measured. I am decidedly unsurprised by this response, but she seems unsure again. “Sam, would you like to touch the tape measure?” I try to help: “Sam – would you like to look at the tape measure? It has numbers on!”

Sam is smiling. There is a train in the book! Sam’s favorite thing! He glances askance at the strip of thin paper, makes a quick decision and turns back to the train. “Nope”.

The kid seriously likes trains

The nurse starts to get desperate. “Maybe I can measure Mummy’s head!”. I decide I have had enough of this charade. While I appreciate her efforts not to touch a child without their permission and her efforts to engage Sam – and I really do – this is becoming a farce. “You’re just going to have to do it anyway”. “Really?”. “Yes! Just do it! He’ll be fine”. The nurse measures Sam’s head… he doesn’t mind, until it obstructs his reading “No, no, no!”.

I’m not complaining about these activities, I’m just setting the scene for your entrance. I am just letting you see a glimpse into how we arrived at the point we saw you.

Nearly 38 inches! He;s going to be a tall one.

The nurse, Sam and I go out the room to weigh Sam. He’s cool with standing on the scales and looking at the numbers. Just under 30lbs. Perfect. He doesn’t want to go back in the room – the letters! He wants to tell me about the letters on the doors outside the room. Amazingly, he is actually pretty good about going in the room, with a minimal but short wail. Me, nervous of medical professionals, unsure how to interact with them, is starting to get more flustered. I’m getting hot. I regret straightening my hair and wearing it down, and wish I had just pulled it up. When it is height time, I haik Sam up onto the bed, he’s pretty tolerant of this – he fusses when it takes too long. I apologize, but these are things toddlers do, right? They are starting to know their mind, and starting to want to control their world. It’s part of the territory, right? No toddler wants to lie on a bed when there are toys and books around. That’s why I like people with / who have had / who work with toddlers. You know the deal, and I know my toddler has not yet hit the ‘terrible 1s / 2s / 3s / whatevers’ so I think he looks pretty good. 37.5″ tall. Not bad. Growing well.

The nurse runs through the checklist: “Is your kid walking?” Yes. “Is he eating a variety of foods?” Yes. “Is he regularly eating fruits and vegetables?” Yes. “Does he have at least 50 words?”. I pause…. I am no good at guessing numbers of things or distances (like… I am often crazily off). It’s hard to think on the spot of 50 words that Sam’s knows. While also managing my cranky toddler who wants to be outside. “Yes, think so”. “Is he sleeping?”. “Ha! No! He was! He has decided he doesn’t want to go to bed this week!”. You are big on sleep and sleep training, and I suspect you are going to go to town on this. We’ll have the familiar jokes that I am a ‘softie’ (actually, more often than not it is my husband who ducks out of your strict commands – please quit with the gender stereotyping). You’ll tell me that ‘we need to put the kid’s needs above our comfort’ and I’ll pretend to be meek about it, and we’ll make a plan. I know how these things go.

Not an accurate representation of bed time currently. Hashtag: toddlers.

The nurse asks me if I have anything to ask the doctor. I hate this. I always feel I have to ask something so that I appear engaged and interested, but as a developmental psychologist who grew up at a busy child minders, who has nannied, volunteered with kids and taught early years education, I generally don’t have any questions. But dutifully, like preparing for a job interview, I have thought of one “Do you have one of those informational leaflets that you print out on potty training? Like we have had ‘how to feed your child’, ‘how to interact with child’ ” and so on? Do you have one for potty training?”. Actually, I don’t need one. I know how to potty train. But I want to give it to my husband who is not moving on this important issue. “You’re STILL doing that?” she asks, incredulous. I am confused. Do I need to remind her my son is only 24 months? Like, this is not a big deal yet? I becoming more flustered and stressed. “You have to ask the doctor”. She says. OK. I am now resigned to another lecture from you. But we’ll work it out. You’ve been a good guy so far. A good pediatrician. We’ve recommended you. Our friends have followed our recommendation. Now I feel guilty about this, but – more on that later,

And she leaves. We wait for you. I sniff – ugh, dirty diaper. I take Sam to change him, and we bump into you going through Sam’s questionnaire. You love kids. You clearly really love kids. You always greet Sam with an excited “Hey Sam – how are you doing?”. You don’t today. You look wary. You look hesitant. “Hi Sam” you quietly and go back to your papers. I worry about your last patient – I hope that you didn’t have to give some bad news to a family. I change Sam’s diaper. Surprise! He doesn’t want to go back in the small room. He does. But he’s pretty grumpy about it.

We play some games together and wait. I am disheveled, and feeling crappy from the nurse. All doctors make me nervous and I am anxious about seeing you. Sam is at the tired toddler stage where at any moment he could throw a fit. He’s doing well, but he is cranky, tired, and really wanting to be at the nurses station where he saw a large jar of lollipops. We’re managing, we’re doing OK but it is not an ideal situation.

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